Read Online When the Body Says No: The Cost of Hidden Stress by Gabor Maté - Free Book Online Page A
Authors: Gabor Maté
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In the morning she would arise at five-thirty, in order to arrive at school early enough to scrawl the day’s lesson on the blackboard, the chalk gripped in her closed fist. As her condition deteriorated further, she finally accepted a referral to an international authority on amyotrophic lateral sclerosis, Dr. Andrew Eisen. Electrophysiological testing and clinical examination left no doubt in Dr. Eisen’s mind that the patient had ALS. At this point Peter and Alexa asked me to review the medical evidence, hoping I would discover something to challenge the specialist’s opinion—or, more precisely, hoping I would support their belief thatthe symptoms were purely stress related. The diagnosis was irrefutable—as Dr. Eisen said, “a classic case.”
In ALS the motor neurons, nerve cells that initiate and control muscle movement, gradually die. Without electical discharges from the nerves, the muscles wither. As the Web site of the ALS Society explains: “
A-myotrophic
comes from the Greek language. ‘A’ means no or negative. ‘Myo’ refers to muscle, and ‘trophic’ means nourishment—‘No muscle nourishment.’ When a muscle has no nourishment, it ‘atrophies’ or wastes away. ‘Lateral’ identifies the areas in a person’s spinal cord where portions of the nerve cells that nourish the muscles are located. As this area degenerates it leads to scarring or hardening (‘sclerosis’) in the region.”
Initial symptoms depend on the area of the spinal cord or the brain stem where the disease first strikes: people may experience muscle twitching or cramps, loss of normal speech or difficulties swallowing. Mobility and limb movement are eventually lost, as is speech, swallowing and the capacity to move air in and out of the lungs. Despite a few reported cases of recovery, early death is usually inevitable. About 50 per cent of patients succumb within five years, although some may survive much longer. The British cosmologist Stephen Hawking, author of
A Brief History of Time
, has lived with the diagnosis for decades—for reasons that may emerge when we come to study his example. In contrast with other degenerative diseases of the nervous system, ALS patients lose muscle control without suffering intellectual decline. As a research paper by Suzannah Horgan, a Calgary psychologist, puts it, “Most stories from patients convey the strains of having to manage the combination of an intact mind and an impaired body.” 1
What causes the neurological degeneration from ALS is not known. There is some evidence there may be immune system involvement, including a dysfunction of the cells in the nervous system that have an immune role. A class of cells called
microglia
serve a protective role in the brain, but when hyperstimulated they may become destructive. An article in
Scientific American
in 1995 cited tantalizing preliminary data pointing to microglia as possible participants in multiple sclerosis, Parkinson’s disease and ALS. 2
Alexa and Peter were striking in their desperation to think their way past their tragic situation. Peter, a retired engineer, would getbogged down in arcane details of muscle electrophysiology, quoting research of dubious significance and proposing theories that would have made an expert’s hair stand on end. He would often interrupt his wife when I asked her a question; she, in turn, would cast sidelong glances at him, as if for approval, as she gave her answers. It was evident that he found the prospect of Alexa’s death unbearably frightening, and also that she appeared to deny the diagnosis more for his sake than her own. I felt as though I was engaged in conversation not with two separate individuals, but with one possessed of two bodies. “Alexa could not afford to think a separate thought,” says Dr. Neufeld. “She could not afford to say anything about Peter that would have indicated she was a separate person from him.”
Also painfully obvious was Alexa’s inability to
In ALS the motor neurons, nerve cells that initiate and control muscle movement, gradually die. Without electical discharges from the nerves, the muscles wither. As the Web site of the ALS Society explains: “
A-myotrophic
comes from the Greek language. ‘A’ means no or negative. ‘Myo’ refers to muscle, and ‘trophic’ means nourishment—‘No muscle nourishment.’ When a muscle has no nourishment, it ‘atrophies’ or wastes away. ‘Lateral’ identifies the areas in a person’s spinal cord where portions of the nerve cells that nourish the muscles are located. As this area degenerates it leads to scarring or hardening (‘sclerosis’) in the region.”
Initial symptoms depend on the area of the spinal cord or the brain stem where the disease first strikes: people may experience muscle twitching or cramps, loss of normal speech or difficulties swallowing. Mobility and limb movement are eventually lost, as is speech, swallowing and the capacity to move air in and out of the lungs. Despite a few reported cases of recovery, early death is usually inevitable. About 50 per cent of patients succumb within five years, although some may survive much longer. The British cosmologist Stephen Hawking, author of
A Brief History of Time
, has lived with the diagnosis for decades—for reasons that may emerge when we come to study his example. In contrast with other degenerative diseases of the nervous system, ALS patients lose muscle control without suffering intellectual decline. As a research paper by Suzannah Horgan, a Calgary psychologist, puts it, “Most stories from patients convey the strains of having to manage the combination of an intact mind and an impaired body.” 1
What causes the neurological degeneration from ALS is not known. There is some evidence there may be immune system involvement, including a dysfunction of the cells in the nervous system that have an immune role. A class of cells called
microglia
serve a protective role in the brain, but when hyperstimulated they may become destructive. An article in
Scientific American
in 1995 cited tantalizing preliminary data pointing to microglia as possible participants in multiple sclerosis, Parkinson’s disease and ALS. 2
Alexa and Peter were striking in their desperation to think their way past their tragic situation. Peter, a retired engineer, would getbogged down in arcane details of muscle electrophysiology, quoting research of dubious significance and proposing theories that would have made an expert’s hair stand on end. He would often interrupt his wife when I asked her a question; she, in turn, would cast sidelong glances at him, as if for approval, as she gave her answers. It was evident that he found the prospect of Alexa’s death unbearably frightening, and also that she appeared to deny the diagnosis more for his sake than her own. I felt as though I was engaged in conversation not with two separate individuals, but with one possessed of two bodies. “Alexa could not afford to think a separate thought,” says Dr. Neufeld. “She could not afford to say anything about Peter that would have indicated she was a separate person from him.”
Also painfully obvious was Alexa’s inability to
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